Hello everyone. As you know from my previous posts I have end stage myelofibrosis and am just approaching my thirty year anniversary of being diagnosed. My mother was diagnosed twenty years ago with ET which fortunately doesn’t give her too many problems. Now, out of the blue my identical twin sister has had a routine blood test which indicates a very high platelet count. Fortunately she is well and it’s completely different to when I was diagnosed. My disease was hard to classify and I was told I had myelofibrosis with features of ET. My sister is being urgently referred to a haematologist, but it is looking like she has ET. I know these conditions aren’t hereditary but it seems we have a family tendency on my mother’s side. Interestingly my uncle on my father’s side had myelodysplasia and my father was being investigated for blood problems when he died of other issues. Just wanted to share this as we are in a state of shock at the moment. My sister was informed of her abnormal blood test result very recently, so it is exactly the same time of year as when I received my diagnosis in 1992! This is making it extra hard to deal with. Thank you for taking the time to read this. Warm wishes. Willow X
Thank you so much for sharing your news and imagine this is a really difficult time for you and your family.
May I ask whether you have discussed this with your Haematology team yet? As you mentioned in your post, usually Myeloproliferative conditions are sporadic and not usually hereditory but there are exceptions which will require review.
I am very glad to hear that your twin sister is well and I do hope that she gets some reassurance and a plan from Haematology very soon.
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Hi @Willow. This must be so tough for you all at the moment and I can imagine, brings back so many memories of when you were diagnosed. How is your sister coping?
As you say, medical treatments have moved on so much and I am glad she is feeling well. However, that doesn’t take away from the fact that this is a worrying time for you all.
It does make you wonder about the links between family members. It would be interesting to see what your team says.
Please take extra good care of yourself. We are all here for you.
Lots and lots of love X
Oh @Willow I cannot imagine what you and your family are going through.
Also your identical twin sister being diagnosed at exactly the same time of year as your diagnosis.
As you say it appears like family tendencies, doesn’t it, it will be interesting to hear what the professionals say.
We don’t just read posts, we care about the people who have had the courage to post, taken the time to post and the people themselves.
Especially as you are so quick to support others.
Really be kind to yourself and you are bound to have a myriad of thoughts and feelings.
Also support yourselves as a family, this will affect all of you differently.
Loads of love xx
Hello Willow yes goodness that is a surprise for all of you - and I feel for you all as I know you have all had much going on in recent times - I hope your sister gets to the haem quickly and some help and answers - as you say it sounds as if it may be ET that will be diagnosed for her with her and as you know good treatment will be available to start reducing her platelet counts
As for familial connections, - with mum and your good self with MPNs along with blood conditions in the family it does seem possible. That strangeness of not inherited but the “tendency” of same and similar conditions being genetically connected. I know my mum had blood problems and my own MPN and also autoimmune condition has likewise been attached to that familial tendency.
Anyway I don’t know if you have come across the MOSAICC study - MPN Voice often make mention of it - that has been looking at various elements of the conditions one being family connections. I was part of the initial study ten or so years back (my hospital and consultant at the time were involved in the research) - although rare in our already rare conditions there are cases where MPNs run in families and more about it is continuing to be researched. This link from MPN Voice has mention of that
Many thoughts to you Willow
Thank you so much @GemmaBloodCancerUK for your prompt and helpful reply. I have just rung the support line as you suggested. Warm wishes. Willow X
Thank you @Nichola75, @Erica and @Jilly20 for your kind words. It means so much and thank you Jilly for the link to MPN Voice. Very interesting. I have heard of the MOSAIC study and was interested to hear your story. Thank you to you all for your support. Warm wishes. Willow X
Hello @Willow My MinL had Mylodysplasia & treated with hydroxycarbomide for high platelets she lived till 90. My husband & his sister have been diagnosed with Chronic lymphocytic leukaemia (CLL), husband also ET & his sister haemolytic anaemia ? Secondary to chemo for Chronic lymphocytic leukaemia (CLL). But she’s also now been re diagnosed as mylodysplasic. Husband on W&W for Chronic lymphocytic leukaemia (CLL) plus hydroxycarbomide for ET. I’m convinced it’s because of the dreadful London smogs they lived through in the 1950’s East London before the clean air acts, MinL would have lived through many more smogs being born in the early 1920’s & living in London in early years & again after the war. I’m sure environmental factors play a part as there were many toxic chemicals in those smogs. Husbands & SinL consultants weren’t that interested in the 3 of them having similar conditions I’m going to look at the study. Best wishes
Thank you @LizB003 for taking the time to reply and for sharing your story. It’s very interesting. Sending you warm wishes. Willow X
This question of familial susceptibility is a fascinating one. My Father died in 1972, and I had noticed for a year of two that the backs of his hands were an unusually bluish colour, as, it turned out, were mine for a few months prior to diagnosis with ET 9 years ago. So always wondered. But at the moment, there doesn’t seem to be much evidence for or against a familial susceptibility. Certainly, the causal mutations are NOT heritable, but whether there is some weakness which runs in families, we really don’t know.
The MOSAIIC study may throw some light on this. If you are in one of the relevant NHS areas (Belfast, Southampton, Northampton, Grampian) and are talking to your consultant, do ask them about the study and if you were interested, see whether you could take part. The more patients we can get who fit the criteria (diagnosis within last two years, mainly) and are happy to be interviewed, the better the research results can be.
Thank you @DickM for your interesting insights. We have managed to get my twin sister referred to the haematology team that I am under so we are grateful for that. I don’t think we are in the right area to take part in the study you mention, but I will be going with my sister to the appointment next week and we will have lots of questions to ask! I will try and give an update in due course. Warm wishes. Willow X
I’m so sorry to hear of all yours & your families MPN blood issues & after reading through I can see you have been offered some sound support. I just wanted to add that MPN Voice is holding an event on 5 November which you can attend personally or virtually. It covers many aspects of the disease & has several different professors as guest speakers. It may be useful for you in some way. I hope that you can get to speak with your haematologist soon to discuss your concerns & in the mean time please feel free to drop into us for as much support needed.
Thank you so much @JoJoflowergirl for thinking of me and telling me about the event on 5 November. I have just registered to join the livestream. My sister has her first haematology appointment on 2 November at the same hospital where I am treated so hopefully we will know more then. Warm wishes. Willow X
Hi @Willow I have been thinking of you all loads.
How are you all doing, especially you?
Be kind to yourselves xx
Thank you @Erica. You are so kind. I am getting lots of flashbacks to my own diagnosis 30 years ago and am in a state of disbelief at the timing of my sister developing problems. I think the reality of it is hitting her also, plus we still have the issue of our elderly mother in a care home and her bungalow that needs to be cleared and sold. It all feels too much. I am limited in what I can do due to my non-healing fractured feet, fatigue and pain. My sister keeps saying she hasn’t got time to be unwell! Warm wishes. Willow X
Oh @Willow I just cannot imagine what you and your sister are going through, but especially you.
What I do know about is flashbacks and for me they are so vivid make me feel on high alert and so yukky.
As we remember the shock and reality of diagnosis is something that does take time.
We have just had to put my sister in laws house on the market as she has had to go into a residential care home. We just decluttered the house and the person who purchased it brought it as a ‘buy to let’ and asked to purchase most of the furniture, which was a result.
You and your sister can only do what you can do whilst being looking after your own welfares.
We and the Blood Cancer UK support line are there for you both, please do use us to say how it really is for you both.
Sending you a never-ending supply of hugs for your pocket to use as required.
I’ve often thought that there must be a “cancer gene” of some sort as out of five siblings, four of us have had cancers of different varieties and several members of the Italian branch of the family still living in Italy have had cancers. Prior to 2015 I’d never met anyone with cancer before and now I seem to have it coming out of my ears. I hope you find some comfort @Willow
Just a quick update. My sister had her first haematology appointment yesterday. The doctor thinks she does have an MPN, probably ET, but is doing more detailed blood tests to clarify. This means that as a family I have myelofibrosis diagnosed 30 years ago (today) my twin sister has ET and our mother also has ET diagnosed 20 years ago. The doctor said he has never come across a case like this before! As I said before, the timing of it is extra hard due to the anniversary of my diagnosis occurring at exactly the same time as my sister developing it too. I spent most of my therapy session in tears today but did manage to read my ‘Thirty Years’ poem to my very kind and understanding Therapist. It’s so hard! Warm wishes. Willow X
Oh @Willow yes, it must be so, so hard for you and your family especially today on your 20 year anniversary of your diagnosis
Perhaps it was meant to be that you had your therapy session today and tears were what were needed.
Do you think you might find putting your pen to paper might help you in some very small way?
If you would like to talk the Blood Cancer Support Line is there for you and you know we all are on our forum.
Very warm wishes and loads of virtual hugs, be ever so kind to yourselves and keep posting.
Thank you @Erica. Actually it is the thirtieth anniversary today of my diagnosis which is why I wrote the poem THIRTY YEARS which I shared recently. I have been producing some artwork today which has helped a bit …
Thank you. Willow X